Estrogen question

MarcieB

Recently I read an article about the latest findings in a quest to understand alzheimer's. One of the points made was the observation that women are more vulnerable to the disease when their estrogen levels drop. (?!) So, here we are, taking anastrozole, and other estrogen blocking drugs to decrease our chances of cancer...but does it, in turn, INCREASE our chance of Alzheimers? It sure doesn't seem like a very good choice! Does anyone have information along those lines?

Bug

I saw something about this, too. I have no info but wanted to thank you for posting the question.

Carool

I read something like this. I had a hysterectomy 15 years ago. Probably have very little estrogen. I can’t do anything about this now.

ChicagoSandy

That observation was breathtakingly simplistic. EVERY woman's estrogen level drops with age, aromatase inhibitors or not. If that observation were true, everyone who is estrogen-deficient--men as well as postmenopausal women--would eventually get Alzheimer's. Such is of course not the case. Genetics are the primary factor--and not even that is a guarantee of developing the disease. It is what it is. We can't live forever, and neither can we stay 100% sharp until our last breath.

MarcieB

Chicago Sandy, I get that. Of course we decrease in estrogen (and I daresay a LOT of other hormones), as we age. And many of us, like Carool, have undergone hysterectomys and we are still urged to take this pill? What is the source of estrogen from an aging ovary-less body? Of course we cannot live forever, but I think most of us will agree we prefer to remain as sharp and active as we can while we are on this earth. If a pill, that we don't really need, starts making life more difficult, I think it is time for some serious evaluation.

Rustysmom

Yes, this is troubling. I was on Letrozole a couple years longer than the original 5 years my oncologist recommended once one study showed that recurrence was higher for some who quit after 5 years. With my family history, I fell in with that group. But, she had me take a newer genetic test recently that showed that I had a less than 1% chance of recurrence, so gave me the option to go off that med. With those odds, heck yeah!

ChicagoSandy

Marcie (et al), I'm surprised that your MO did not tell you why AIs are necessary--actually, shocked that you don't know (not your fault) that you don't need functioning--or ANY--ovaries to make estrogen!

You make estrogen all your adult life, because your adrenal glands and fat cells (the tissue, not the actual fat that fills them) make an androgenic hormone called androstenedione (the same stuff that Sammy Sosa & Mark McGwire got caught injecting back in the late 1990s). Your liver then makes an enzyme called aromatase that is the necessary catalyst for converting that androgen into estrone, a form of estrogen--which is what estrogen-receptor-positive tumors need to fuel their growth. Now, you can reduce the number of fat cells via surgery (not liposuction, which removes only their inert contents), but you cannot live without adrenal glands.

The reason for prescribing AIs for at least 5 years is to slam the brakes of that androgent-to-estrone process long enough to (hopefully) deprive any remaining micromets of the estrogen that fuels their survivl & growth. I say "hopefully," because if you live long enough the remaining micromets figure out how to synthesize their own estrogen--which explains recurrences after 20-30 years NED. If you had developed dementia during that interval, it's NOT from being estrogen-deficient. There's a difference between dementia (even clinically-diagnosed "mild cognitive impairment,"aka MCI) and the natural decline in short-term recall and slowed reaction/processing time that affects us all as we age.

"Brain fog" in those AI-takers who have not had chemo (or COVID, both of which damage brain cells) is temporary and reversible once we have "served out" our AI "sentence." At worst, we revert to baseline (i.e., pre-AI) brain function for our age unless we already have MCI occurring independently of reduced estrogen supply.

It goes without saying that you should NOT try to supplement with estrogen!!!

ChicagoSandy

Rustysmom, that newer test is called the BCI (Breast Cancer Index), but many MOs don't prescribe it if your Oncotype DX is either high enough that your recurrence risk requires continued aromatase inhibition (or blood-tested tumor markers or scans are showing signs of recurrence or heaven forbid, mets), or so low that recurrence is exceedingly unlikely anyway, especially if you are in your 80s. (I think it may be an insurance coverage/reimbursemtent issue too). My MO did say that after 5 years, most of AIs' benefits have already occurred. By the end of this month I will have completed 6 years, and I see my MO in April. I have my annual screening mammo this week--and unless anything new is discovered I will wait till April to discuss dc'ing Letrozole after 6-1/4 years. My side effects--other than slower metabolism--have largely abated over the past 3-4 years, and I am not as eager to discontinue it yet as I was at 3 years.

MarcieB

CS, that is all very interesting and I will admit I never actually asked my doctors about it (although I am having a check-up Wednesday, and I intend to ask). I know there are other sources for estrogen besides ovaries, but I always thought ovaries were the main source for women. I googled the question and here is only one of the results that turned up, they were all pretty much the same:

What produces estrogen in the body?
(answer)
The woman's ovaries make most estrogen hormones, although the adrenal glands and fat cells also make small amounts of the hormones.

So, I do not feel stupid for having assumed there would be a decrease in naturally occurring estrogen in a post-menopausal woman.

ChicagoSandy

Never said you should feel "stupid" for not knowing that, but "Dr. Google" is a filterless idiot. I get my information from my doctors; respected academic medical journal articles & studies that come to me in physician-and-nurse-specific e-mail aggregator sites (for awhile, before he had his own e-mail address my cardiologist husband used mine to subscribe to these); the articles written on Breastcancer.org by gynecologists & oncologists; and most importantly, comprehensive breast cancer manuals written by breast cancer specialists and aimed at patients: "Dr. Susan Love's Breast Book" (indisputably the Breast Cancer "Bible") as well as a similar one by NYC breast cancer surgeon Dr. Elisa Port.

Bug

Rustysmom, I’m glad the genetic test indicated you have less than a 1% chance of recurrence. Good news.

MarcieB

Rustymom, I think that is pretty cool too. What kind of test did you have to take? A blood test? I have been on anastrozole for two years and so far I really don't have bad side effects - some hot flashes at night from time to time, and joint stiffness in the morning. I haven't really gained weight from it (I am careful with my diet), but my hair has thinned and I think that is what bothers me the most. I was told I should expect to take it for 10 years. But, Letlifehappen posted a blog from a medical journal a few months ago that suggested after 7 years an aromatase inhibitor my cause more harm than good (because of possible thinning of bones). that makes sense to meIt sounds like you took your meds for about 7 years? I am hoping it works like that for me too. I would rather not take a drug that could possibly increase any chances of Alzheimers or dementia - that is a whole lot different than not being 100% sharp.

Rustysmom

MarcieB, I had an Invitae Multi-Cancer Panel that evaluated 84 genes. It was a saliva test.

ImWorthIt

Chicago Sandy,

I don't blame Marcie for her response that she does not feel stupid since your response was

"Marcie (et al), I'm surprised that your MO did not tell you why AIs are necessary--actually, shocked that you don't know (not your fault) that you don't need functioning--or ANY--ovaries to make estrogen!"

You make it sound like you are shocked that Marcie does not know what anyone "should" know. When you start off with "I am actually, shocked that you don't know....." it makes it pretty clear that you are talking down to her- which seems to be how you interact with most people.

I think that, based on your follow up response, perhaps what you were trying to convey was:

Marcie (et al), I'm surprised, actually shocked, that your MO did not tell you why AIs are necessary-and that you don't need functioning--or ANY--ovaries to make estrogen! Having that information is important to know. If someone didn't explain it well, it's certainly not your fault that you didn't know."

Thankfully, Sandy, you are a very educated person and you seem to have MO's that explain things well and you are also married to a physician (Yes, I remember seeing this at some point in the past). So, you seem to have a great backup system. Some MO's just don't explain things well. Some patients don't know (or care) enough to ask probing questions until they read an article that makes them wonder about something. Some read articles in the general media, and others, like you, get their information from medical journals.

Quite frankly, those medical journals are over the heads of many, if not most, people. I just about get a headache trying to read the informational stuff on new medications that they include in mainstream magazines one would pick up at the grocery store. If I am curious enough, I will read them. Most medical journals are filled with articles that tell you how to make the watch when most people want to know what time it is. Yes, if you are curious about the "why" and the process- that is probably very interesting and educational information.

My surgeon, the head of my care team, gave me a great book when I first started my journey. She told me that, at some point, I might need to know everything that was in the book, but to break it down and read a little about whatever I needed to know at a given time because it gets so overwhelming. She also gave me other sources and articles based on my questions at the time.

My MO explained to me why the AIs were necessary and gave me a basic "cost benefit analysis" (Pros and cons) so that I would know what to expect- the good, the bad and the ugly. He's pretty down to earth and he knows I will ask questions (probably a lot more than he cares for me to ask but he's super patient with me) if I want to know more about things. I really bore down in the early days about the Oncotype DX score and wanted to know what it was, why they relied on it, what determined the score. He said "It's all very technical and more than most people want or need to know." I told him I was just interested because other people had talked about it and I wanted to be educated. He gave me a little more information and I was fine.

Anyhow Marcie, I think most of us can concur and agree that we don't want to stimulate estrogen production in order to keep our cancer at bay. We may just have to find other means to combat the brain fog, memory loss and other stuff that does come with genetics and getting older.
No need for any of us to feel stupid. I am sorry that some people feel that talking down to others is appropriate, and I strongly suspect we are far from the only people who get treated this way by the same people over and over.

ImWorthIt

Marcie, most of the information I can find does not lead me to believe that the "possible" increased odds of Alzheimers and/or other dementia are enough to warrant stopping Anastrazole to prevent it. I would rather take the medicine and decrease my chances of BC recurrence than worry over Alzheimers in this particular season of my life. Perhaps with a different set of circumstances, I might feel differently. I know there is not much genetic predisposition on my father's side for memory loss/cognitive disorders. Most of my relatives on that side of the family tree lived well into their 90s with better cognition than I believe myself to have on most days. LOL
My mother's side of the tree is a bit bare as she was adopted and she has never wanted to seek information on her birth family of origin. Though she has told my brother, and me, that if we wanted to look further to find out genetic information she would agree- she has said she wanted to know nothing about anyone who might contact us. We have both decided to leave it alone as we have both had friends in the recent past who opened Pandora's box of questionable characters so to speak. We can just work on the assumption that we are "ground zero" or "first case history" in our family.
I am sure some people may disagree with that methodology, but it's not their decision to make.

MarcieB

ImWorthIt, I appreciate your response. Since this site is not functioning as well as it used to, there is less and less correspondence here. As a result I have not heard from this particular poster in quite some time and I forgot how much she likes to deliver the back door insults. It's fine. I realize I did not need to defend myself - we are all women here and we know that we begin to wither after menopause and we know why. I only put this question out there because of what I read and I wondered if anyone else pondered it?

I am of an age where an onset of dementia is frightening. My grandmother, mother, and aunt all had it before they died. All of them were in their 90's but they all also took medication for high blood pressure, which I have never heard of causing a problem, so it may well be genetic. If I have a propensity to develop this disease I certainly don't want to take anything that might hurry it along.I do see my PA tomorrow for a regular check-up so I will have the opportunity to discuss this with her.

Carool

ImWorthIt and Marcie, thank you both for what you said. I thought similarly about ChicagoSandy’s comments, starting from her very first sentence in her first comment: “That observation was breathtakingly simplistic.” *That* comment took *my* breath away.

Marcie, I, too, am of that age and worry about getting some form of dementia. My mother died of pancreatic cancer at 67, somewhat too young to have shown any signs of dementia; my father didn’t have it when he died at 84. Still, I fall into a few categories that put me at higher risk. I think many older people worry about it. But there’s not much (other than exercising physically) that one can do to prevent it, from what I know.

ChicagoSandy

I still say that MOs have an obligation to tell their patients why they need to take an aromatase inhibitor, because too many laypeople still have the mistaken impression that ovaries make much (if any) estrogen even after menopause (and that removing ovaries means the end of estrogen production). And all doctors have an obligation to tell people why they are prescribing a certain medicine--the patient shouldn't have to ask nor even think they need to ask.

I also feel that patients have an obligation to learn all they can about their medical conditions--and that goes double (or even triple) for cancer.

And the "observation" that was "overly simplistic" was the one made by the *writer of the article* Marcie read, not by Marcie. (Read the original post about the article; "One of the observations made..."). Again, though, I am shocked that her MO did not explain to her why we postmenopausal ER+ bc patients need to take a drug that inhibits aromatase, and that the body still makes enough estrogen to fuel a tumor, even without functioning ovaries. That doctor dropped the ball.

MarcieB

Geez. I'm sorry I asked.

ImWorthIt

Though I cannot speak for Marcie, perhaps the doctor did offer her an explanation and, in the fog of trying to remember a thousand medical things, the explanation was either unclear, given in technical terms, or just missed when she was trying to take in a lot. I do love that I get notes from my doctors after each visit. The notes are always simple/basic, but sometimes they remind me to ask for more information or to clarify something.

I think many of us think we hear everything, but sometimes we miss something that gets said.
I also get medication information with every new prescription when I get something from my pharmacy. Sure, it's mostly filled with technical jargon and often gets tossed in the trash but they do give it to me. Last year, my doctor increased my dose of synthroid- a medicine I have been on for most of my life (although in my youth it was not synthetic). I told the pharmacist I didn't need the printout, but they gave it to me anyhow because it is their policy (my pharmacy's) to give the information any time a new medication is given even if it's just an increased or decreased dose of something the patient takes regularly. So I have a few backups.

In any case, Marcie is certainly not stupid or foolish. I don't think Sandy means to be unkind. I think she tries to impart information, but sometimes makes assumptions that are in no way stated in the prior posts.